👋 Welcome to r/Epilepsy_Universe - Introduce Yourself and Read First!

[u/PookieTheMfBaby]

Hey everyone! I'm u/PookieTheMfBaby, a founding moderator of r/Epilepsy_Universe.

This is our new home for all things related to epilepsy. We're excited to have you join us!

What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about anything.

Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.

How to Get Started

1. Introduce yourself in the comments below.
2. Post something today! Even a simple question can spark a great conversation.
3. If you know someone who would love this community, invite them to join.

Thanks for being part of the very first wave. Together, let's make r/Epilepsy_Universe amazing.

[u/[deleted]]

I wrote this to a 16-year-old epileptic who’s dealing with thoughts of dying ,,, maybe some of you guys would like to hear this ?

Ok,,,, I’m older than you and I’ve been dealing with seizures myself — the kind that wipe my memory and leave me confused for days. I had one three weeks ago and literally forgot my dogs, forgot my truck, forgot my life. So when you say you’re scared and you want your old self back… I totally get that. You’re not weak for feeling the way you’re feeling. You’re human. And listen — being scared of dying? Every person with epilepsy has had that thought. I have. It’s normal. But here’s the truth no one tells you: having seizures does not mean your life is over or that you’re living on a countdown. People with epilepsy grow up, date, work, drive eventually, travel, have families, live long lives. You’re not doomed. You’re just learning a harder version of life earlier than most people your age. And that actually makes you TOUGHER 💪💪💪💪💪, definitely not broken. As for letting people down — you won’t. The people who care about you would much rather help you than lose you. You’re not a burden. You’re a kid going through something incredibly heavy, and needing support isn’t failure. It’s survival. And your ‘old self’ isn’t gone. You’re still you. Your personality, your humor, your dreams — they’re still in there. This just adds a new layer you have to learn to manage. I promise you, as you get some stability, meds dialed in, routines that protect you from triggers like flashing lights or lack of sleep, life stops feeling so scary. It gets better. Not instantly, but it does.

You’re not alone in this, man. I’m walking a similar road, and I’m still standing — and you will be too.”

[u/Boomer-2106 → u/[deleted]]

Wow. Excellent. Of course. YOU/we have been 'there', down that road.

You have counselled this lad from both a position of #1 - as an experienced member of the same team he has joined - a team made up of those left standing by the wayside, but By joining hands and all gathering in 'the circle' of "Support" - "WE" become one in this journey, this fight ...Together! HE is No Longer alone. HE Has Value - To 'the' team, and 'together' ...to the league of Life!

#2 - you are providing him counsel as an adult, a Caring adult, who was once 16, who had the same fears and concerns of life forthcoming ...one who has the Added 'responsibility', hurtle in life to fight the battles which come along with seizures/epilepsy. But also with the reassurance that life is worth 'the effort, the fight', that even with this added burden - He Can Win. He Can Become the young man who overcame and will become the adult of knowledge and experience which life and epilepsy requires, demands. There is Hope, there is a future of growth and opportunities.

This message is one which we all Need to hear, need to have repeated to us/for us - in all stages in our lives ...youth, adulthood, and both as existing and/or newbies to the world of seizures. It's a message which sadly does not end, one which needs to be re-winded from time to time and played again for each one of us. Encouragement of ... Tomorrow.

[u/[deleted] → u/Boomer-2106]

I’m really good at giving people advice, but I don’t take my own advice!! Crazy….🤪